Lyme Disease- and until a couple months ago I had no idea.
Since I was a teen, I have seen dozens of doctors (allopathic and alternative) and have undergone more tests than I can remember looking for answers for my seemingly endless health issues. Myself and especially my parents have spent thousands of dollars on my medical bills. I have been diagnosed with variety of conditions, treated for many of them, but often went home frustrated with no answers. Sometimes I would go through periods of weeks or even months that I would feel good, but then things would slip back into a downward spiral. I tried to ignore the symptoms and stubbornly attempted to hold onto my normal active lifestyle the best I could.
However, particularly over the last year more health issues continued to present themselves, and things have gotten progressively worse. I have always been an active person- skiing, hiking, mountain biking; these things have been a big part of my life forever. These have been the things that have kept me happy and healthy, and they all began to slowly be taken away from me.
Eventually, my doctor recently put things together and encouraged me to get tested for Lyme disease. My results came back positive.
I finally got some answers! It all made sense! I feel like I have had this secret, this side of me, that I have been keeping in for a long time. The thing about Lyme disease is the inconsistency of symptoms- although I live with a few symptoms that are relatively constant, such as fatigue and some level of pain in my body, my debilitating symptoms come in waves. Before my diagnosis, when things got bad, I usually blamed myself- 'you're out of shape, you need to work harder, you're just not good enough", too embarrassed to show others my secret weakness. Even now that I know and have shared with some of my friends and family, it's really hard to talk about how I feel and allow myself to be how I feel without just feeling really lame. Obviously the goal is to beat this thing and come back even better than before, but in the meantime I can't help but feel worthless at times because I just can't do so many of the things that have been such a big part of my life, things that have been part of many friendships and relationships in my life- things that make me Carmen.
WHAT IS LYME DISEASE?
Lyme Disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia Burgdorferi, which is transferred through the bite of a Black Legged tick. This bacteria attacks the central nervous system, can cause infection of multiple organs and produce a wide range of symptoms. If caught promptly, treatment can eradicate the infection in 6-8 weeks. If left untreated, the Lyme spirochete can embed into any area of the body, making treatment long term and very challenging. This condition is called Chronic Lyme Disease. Chronic Lyme Disease can be immobilizing and even fatal. There is much controversy and debate in the medical community on treatment protocol and the possibility of a cure for Chronic Lyme Disease.
Unfortunately my story of going years undiagnosed, is all too common. 50% of people diagnosed with Lyme Disease have no recollection of a "bullseye rash," a symptom particular to Lyme infection. In years past this rash was the main diagnosing factor. These days you will find most physicians using the Western Blot blood test. This testing protocol is not sensitive enough to pick up the bacteria 100% of the time and in many cases this produces a "false negative." These are problems you may run into if your doctor even thinks to test you for Lyme Disease in the first place. In most cases doctors overlook Lyme Disease as a possible cause all together. (Lymelight Foundation)
As much as I have tried to fight it, Lyme has continued to steal more and more from me. The fatigue and pain has become so unbearable that currently I'm not able to do much physical activity besides walking and gentle yoga- and sometimes even that has become too much. There are days it is a challenge to just leave the house. Psychologically, all of these issues, combined with many of the cognitive effects of Lyme (such as short-term memory loss, confusion, word-finding, 'brain fog' in general, etc), have presented a whole host of other problems. Currently, daily life is often a struggle. I feel like I have lost 'me' in many ways. My mood can swing drastically, and trying to accept how I have been feeling and how limited my daily activities are now versus what they were is exceptionally hard work every day.
A few, though not nearly all, of my most impactfull symptoms...
-arthritis-like symptoms in various joints, particularly my hands and jaw
-overwhelming fatiguepoor stamina
-various digestive system issues (severe pain, nausea, diarrhea, indigestion, etc)
-Feeling like I can't breathe or cannot get enough oxygen
-mood swings, irritability, depression, anxiety, panic attacks
-brain fog (difficulty concentrating, absorbing new info, forgetfulness, etc)
Since finding out about Lyme, I have made some big changes in my life. My diet consists of only whole, organic foods (though I must admit a couple moments of 'cheating'). I have been taking about 18 different supplements a day and working with various wellness practitioners to support my body as I work towards healing.I take epsom salts bath multiple times a week. I have had to try to limit social activities and work less. I see a therapist at least a couple times a month. I am working to achieve balance in all aspects of my being to try to promote healing. I am trying to live the best life I can while living with this illness and stay positive.Yes, sometimes it is hard to not feel defeated. But I don't want to live the rest of my life this way! I want to beat this thing!
Unfortunately, due to out-dated and sometimes politically-driven treatment guidelines for Lyme patients, Chronic or Late-stage Lyme disease is not recognized by the Center for Disease Control (CDC) as an official illness, (to understand the politics of this, I recommend you watch the documentary Under Our Skin, or for something shorter, check out www.lymeoutlyndsey.com ) thus the majority of treatment for Lyme is not covered by insurance. Also, even if they did update their treatment guidelines, many of the things that are crucial to recovery from Lyme Disease, like high-dose supplements, are never covered by any insurance company for any reason.
I am working on changing everything I can about my lifestyle to change this disease, but I have also done almost everything I can to pay for my treatment while still living as balanced of a life as possible. I am lucky that I am fortunate enough to have insurance, but insurance doesn't cover everything, and medical bills from multiple MRI's, CT scans, blood testing, physical therapy, seeing dozens of doctors, etc. have added up. My credit card is maxed out. I have taken out loans and relied on my family and partner to help support me with living expenses as my ability to work continues to be more and more limited, but I cannot cover the cost of treatment myself. Long story short, I have scraped the bottom of the barrel. I am not saying this to paint a poor- pitiful-me picture. I am saying this, because I want you to know that I have tried. Also, I want people to know what a terrible situation Lyme patients are in with denial from insurance companies. Something has to change!
I humbly ask you for your help.
While it is scary to ask for help, part of this learning and healing experience is being vulnerable and reaching out for help throughout this process. I am asking for you to help me prevent the cost of treatment, keep me from getting better. I want to defeat this thing!
WHY HELP ME
One of the scariest parts of this disease is how little so many people (including myself, until I found out I had it) know about this disease. It is estimated that there are up to 300,000 new cases of Lyme disease each year in the U.S. alone. Yet, only around 30,000 of them will be properly diagnosed and reported by the Centers for Disease Control (CDC). The CDC themselves admit that the actual cases of Lyme disease could be up to 10 times higher than those reported (Lymelight foundation). Throughout this experience, I hope to use this opportunity as a chance not only to heal myself, but also to educate others about this disease, to show others that you can beat this disease 100%, and to hopefully help prevent others from suffering from this terrible disease.
When I started thinking about how I was going to pay for all of this, some people recommended I look into fundraising. I have had a lot of fears and doubts about reaching out and asking for help- is scary to put yourself out there and be vulnerable! But what I am learning through the support of my beautiful friends and family is that this world is a community, and sometimes we just have to help each other out.
If you are able to help me by either contributing in any amount or sharing my story with others, I promise to live the rest of my life with gratitude and empathy to the beautiful community that we live in. I will work to educate and raise awareness about Lyme Disease, prevention and be present to others who are affected by Lyme Disease. Any money left over after treatment I will donate to the Lymelight Foundation, a foundation who's mission is to to provide grants to enable eligible children and young adults with Lyme disease to receive proper treatment and medication as well as raising awareness about Lyme disease. I will continue to work on recovering 100% and show others who are suffering that it is possible!! I want to spread hope in this seemingly hopeless illness. I want to be able to live my life to the fullest as a contributing member to society. I am 24 with a lot of life left to live. Together, we can beat this thing! Thank you.
- Taylor Pulver
- Joe & Sally Thomas
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